Hydrocephalus Awareness Week 2022 - Farrah's Story

Farrah's Story... told by mum Casey

"I hope our story can help people understand this condition and never doubt anything. I can't express enough how helpful Shine is. If anyone is feeling lost, they are always there, reach out they are totally amazing!"

What was life like before you received support from Shine?

"Farrah was born 6 weeks premature on 16th September 2017. I was a carrier of Group B Strep but was not given antibiotics during labour despite the doctors knowing I was a carrier. I was left in distress, Farrah was born then brought to HDU for investigation and a lumbar puncture was performed. She was diagnosed with Group B Strep infection at birth, got some antibiotics and was discharged for home.

When Farrah was 6 weeks old, she became seriously ill and was rushed to A&E, it was then a doctor came into our room and told me that my daughter was gravely ill. They performed a lumbar puncture while we awaited results. Farrah was put on an antibiotic to cover EVERYTHING, she also had her head circumference checked on admission.

Following Farrah's discharge from hospital and during a routine home visit only a few days later, the health visitor noted that her head was measuring on the larger size than normal. The health visitor did not raise this concern until the next day as she said she did not want to worry us and wanted to contact her advisor before she advised me to take my daughter back to hospital. Farrah was subsequently admitted. I felt no one would explain to me what was going on. Anytime I questioned medical staff, I felt they were all blaming each other.  I started to record the conversations I was having with them as I was so stressed and couldn't believe a hospital had missed all these warning signs.

We were told Farrah was booked for an MRI brain scan, which was delayed. I kept asking why she was discharged in the first place and that I would like to view my daughters’ notes. I was told I could not view her notes and would have to go to a solicitor to get them. I was told there could be several different reasons that may have caused her illness, one being premature birth.  I know this was not the case and I will fight for the truth for my daughter.

Farrah’s MRI was classed as a non-emergency because she fed well, and her observations sat completely normal. When she finally did get her MRI it was discovered that Farrah had an excessive amount of fluid in the brain - this shocked the doctors as Farrah’s observations were always on point and she fed so well. We were then told it was caused by a previous brain bleed that may have come from the Group B Strep infection at birth. If I had of been listened to and given my antibiotics when I was in labour, my daughter would not have to have suffered a lumbar puncture and all the additional pain she suffered. I fought hard to be heard as I knew my daughter was ill. I was told many times she would be fine. I was then informed that she needed emergency surgery to insert a VP shunt.  

This was a very distressing time for the family as we felt scared, everything was explained by our neurosurgeon who was the most caring person we spoke to at that time. We were told Farrah was going for her surgery, we would have to sit tight and consent to this procedure - we signed the forms feeling overwhelmed and lost as Farrah left for surgery. We waited in the parents’ area. After a few hours our neurosurgery team came in to tell us that the surgery was successful. They had managed to drain a large amount of fluid from her brain. The neurosurgeon actually brought me back my daughter's first hair cut from her surgery - this really touched me as a neurosurgeon he is very protective over his patients.

We were then told to expect Farrah to not meet milestones, due to the complications with hydrocephalus, and only time would tell what damage the fluid may have caused. Farrah has required one shunt revision, due to her ventricle collapsing and a complete shunt blockage.

A few years ago, we noticed that she was prone to absences, following an EEG she was diagnosed with focal epilepsy. She has issues with sensory integration and doesn't like large crowds. Despite this Farrah has defied all the odds and is an intelligent 4-year-old and achieved all her milestones and more. She does struggle with sensory issues and has anger outbursts."

How has Shine supported you?

"As she gets older, we are learning more about her condition and how it affects her. We have the most amazing support from Shine. My Support and Development Worker got me set up on parent pages - I was straight on to them reading other people's story's to help me process what had happened. We also have a great family support especially from her granny and grandad. She is currently at nursery school and will be moving into mainstream primary in September. She loves dancing and gymnastics; she is very determined and doesn't let anything stop her. Although Farrah has a lot of different personalities, up and down days, whether it’s a sore head, sore eyes or legs, she is a great big sister to her 3 younger siblings. 

I heard about Shine through a friend whose son has hydrocephalus and had received support and advice from the charity. The Support and Development Worker visited me at home and gave me information on the condition, sorted out family funds and linked me to other families, providing a supportive network. Farrah enjoyed the opportunity to socialise with other children with the same condition at Shine’s children’s group and Christmas parties. We are looking forward to meeting up with everyone again when the COVID restrictions are lifted. 

We have always been grateful for the ongoing support from Shine, they are our only support network and we are so happy to have them behind us. We have done fundraising and have raised over £2,000 for the charity. We will continue to do so in the future. I hope our story can help people understand this condition and never doubt anything. I can't express enough how helpful Shine is. If anyone is feeling lost, they are always there, reach out they are totally amazing!"